Gibson Shannon G, Axler Renata E, Lemmens Trudo
1 University of Toronto, Ontario, Canada.
2 University of Windsor, Ontario, Canada.
J Empir Res Hum Res Ethics. 2017 Dec;12(5):310-325. doi: 10.1177/1556264617723137. Epub 2017 Aug 17.
A key issue impacting public trust in biobanks is how these resources are utilized, including who is given access to biobank data and samples. To assess the conditions under which researchers are given access to Canadian biobanks, we reviewed websites and contacted Canadian biobanks to determine the availability of information on access policies and procedures; research resulting from access biobank data and samples; and conditions on private industry access to biobanks. We also conducted expert interviews with key Canadian stakeholders ( n = 11) to obtain their perspectives on biobank transparency and access policies. Among 21 Canadian biobanks, there was wide variation in the access information made publicly available, and the majority of these allowed access by industry applicants. Biobanks should be governed by the principles of transparency, accountability, and accessibility, and attention must be given to the conditions around the commercialization of biobank-based research.
影响公众对生物样本库信任的一个关键问题是这些资源如何被利用，包括谁能够获取生物样本库的数据和样本。为了评估研究人员获取加拿大生物样本库资源的条件，我们查阅了相关网站，并联系了加拿大的生物样本库，以确定关于访问政策和程序的信息是否可得；利用生物样本库数据和样本开展的研究情况；以及私营行业访问生物样本库的条件。我们还对加拿大的主要利益相关者（n = 11）进行了专家访谈，以了解他们对生物样本库透明度和访问政策的看法。在21家加拿大生物样本库中，公开提供的访问信息差异很大，其中大多数允许行业申请者访问。生物样本库应以透明、问责和可及性原则进行管理，并且必须关注基于生物样本库研究商业化的相关条件。
